HSG Evening Blog: We Love Our Families
Today was Family Day.
For those of us who are clinicians and researchers in HD who happen to come from HD families, today was a special day. Today was the day that all of the science over the past few days of HSG 2015 comes together. Today was the joining of science and research with the families who are on the front lines of HD. These families are the pioneers. They are the warriors. They are the champions. They are the ingenious ones who have figured out how to “hack” Huntington’s. These families make it possible for scientific research to take place. For some HSG participants, these families are why we are here.
These Huntington’s hackers have figured out how to navigate the complex, confusing, and challenging world of living and loving someone with HD. When conventional knowledge about caregiving failed, these Huntington’s hackers figured out a work around. Erika Bjorkland Pope shared some of her Huntington’s life hacks with us today:
- Accept what cannot be changed
- Find inspiration in others
- Focus on your own breath
- Don’t waste your energy
- Accept strength regardless of the source
- Stay optimistic
In the middle of talking about mesenchymal stem cells, brain-derived neutrophic factors, antisense oligonucelotides, small interfering-RNA, and adenoviruses, these Huntington’s hackers have figured out how to make it work.
Joining members of the scientific community with the HD community is like a great meeting of the minds. Complexities in science and complexities in caregiving came together for a sharing of best experiences and best practices. The scientific community had the chance to share their passion with the families helped by their research, The HD community had the chance to share their passion for knowledge. Dr. Andrew McGarry of Cooper University Hospital shared a quote in this morning’s research symposium:
Tell me and I forget, teach me and I may remember, involve me and I learn.
On all sides of the HD spectrum – researchers, clinicians, psychiatrists, social workers, geneticists, neuroscientists, drug developers, people with HD, children at-risk for HD, the gene positive and the gene negative, the caregivers, the loved ones – on all sides we came together on this family day to involve each other, to learn, and to share. We shared our commitment to the care of HD. We shared promise. We shared hope.
A special thank you to the HDSA Central Florida Affiliate for its hard work organizing HD Family Day!
-Jared Husketh, contributor and director of clinical services for HD Reach